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  • new to the forum

    I am new here and finally decided to register and post. My symptoms are identical to IC/PBS. Burning, irritation, frequency when irritation is present, nocturia, pain at night. I have now had three different opinions from three different doctors! Now I know what everyone means by the hardest part is getting the diagnosis. One says it is just a slight irritation, one says it is caused by nerve inflammation, and the other one didn't say and says he can't diagnose until all possibilities are excluded. All three have different treatment plans. Have been trying the diet and using prelief but so far have not found anything except maybe caffeine and red wine that makes it worse. My uro was impressed that I was familiar with the current AUA guidelines. He said he's never had a patient that even read anything by the AUA, so I'm very grateful for this network to keep us updated. Sending hope and prayers to all of us here for healing.

  • #2
    to the IC Network. I do hope you get some answers soon. Not knowing what's going on can be very frustrating.

    Warm hugs,
    Donna
    Stay safe


    Elmiron Eye Disease Information Center - https://www.ic-network.com/elmiron-p...mation-center/
    Elmiron Eye Disease Fact Sheet (Downloadable) - https://www.ic-network.com/wp-conten...nFactSheet.pdf

    Have you checked the ICN Shop?
    Click on ICN Shop at the top of this page. You'll find Bladder Builder and Bladder Rest, both of which we are finding have excellent results.

    Patient Help: http://www.ic-network.com/patientlinks.html

    Sub-types https://www.ic-network.com/five-pote...markably-well/

    Diet list: https://www.ic-network.com/interstitial-cystitis-diet/

    AUA Guidelines: https://www.ic-network.com/aua-guide...tial-cystitis/

    I am not a medical authority nor do I offer medical advice. In all cases, I strongly encourage you to discuss your medical treatment with your personal medical care provider. Only they can, and should, give medical recommendations to you.
    [3MG]

    Anyone who says something is foolproof hasn't met a determined fool

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    • #3
      How frustrating for you! Even with the new guidelines you showed him, he didn't want to diagnose? Are any of them proposing some tests? In a way it is nerve irritation because the bladder lining is compromised and acidic drinks and foods can get in there and cause inflammation. There is no pain without nerve endings right? So it seems kinda funny to say that.... What are their treatment plans? How annoying right?!!
      Cindi


      Gelnique for frequency/urgency - works great
      Macrobid after sex
      Prilosec, continuous birth control pills
      synthroid .088mg, mucinex-d, restasis

      Supplements: Desert Harvest Aloe vera, Cysta-q, prelief, magnesium and calcium, Vit D, flaxseed oil

      Diag Mild IC Jan 11 but have had symptoms for 25 years. Also have GERD, TMJ, IBS-C, chronic dry eye syndrome, hashimotos thyroiditis, non-allergic rhinitis.

      IC Diet Link: http://www.ic-network.com/diet/2009icdietlist.pdf
      AUA 2011 Guidelines to diagnosing and treating IC overview- http://www.ic-network.com/forum/showthread.php?p=571592
      AUA 2011 Guidelines to diagnosing and treating IC PDF: http://www.auanet.org/content/guidel...ent_ic-bps.pdf
      Great treatment flowchart on page 19 of the pdf

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      • #4
        ICNDonna- Thank you for the welcome.

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        • #5
          cmclien- Yes it's all very frustrating. I've had the cysto with distention. It showed a very slight inflammation and nothing else. Pelvic floor assessment showed severe pelvic floor spasms and went to PT for two months. Internal myofascial release etc. stopped the spasms. Everyone seems to be hemming and hawing over what to diagnose me with. Current uro suggested the neuromodulation (new one- non invasive) so I seem to think he is leaning toward a nerve problem somewhere. I guess he hasn't had time to read the current AUA guidelines yet! Says he doesn't do instills. OMG- they are all so different in there opinions and treatment plans - aren't they?

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